In the Moment

I’ve cared for my husband for nine years. Here are the five most important things I’ve learned

Luanne Bole-Becker

A decade ago, Alzheimer’s dis-ease wasn’t on my radar. My husband, Bob, and I were in our fifties, immersed in our careers. He was a local radio and television personality, and together we had built an Emmy Award–winning video production company. Our two boys were working, with our youngest just a year shy of college graduation.

In 2012, Bob received a shocking diagnosis: probable Alzheimer’s. He was 58. There was no family history of dementia; he’d never had a head injury. I couldn’t fathom how this could happen or how our lives would change.

Nine years later, I can emphatically say that Alzheimer’s has brought us challenges and joys. It drew us closer. Even when a spouse has dementia, you can still have a productive and loving life together. Here are the five most important lessons I’ve learned as a long-term caregiver.

ASK FOR HELP

Alzheimer’s often causes the person who has it, as well as those who take care of them, to shrink from sight. Friends sometimes pull away too. It can be awkward communicating with someone who has dementia. There’s a loss of shared events or mutual responsibilities, even a fear of facing one’s own mortality.

Because Bob was in the public eye, I knew he would likely lose his jobs if word got out. To give me time to plan, I told almost no one.

We’d just moved into a new home when Bob was diagnosed. My coworkers and friends would ask: “How’s the new neighborhood?” “Find any new restaurants?” “Got all those boxes unpacked?” I wanted to shout, “Our lives are falling apart, and I don’t know what to do!”

As Bob’s condition worsened, I finally confided in more people. What a relief! I got better at asking for help. I used social media to find people to show me how to fix blocked drains and reglaze windows. Our church’s women’s group brought us meals. I launched a Facebook page to keep old friends and colleagues informed, which elicited offers to take Bob out. (One friend even took him to the Indy 500!) Two of Bob’s coworkers began an annual tradition of helping me wrap my Christmas gifts. As Bob’s Alzheimer’s progressed, I brought in a volunteer to provide respite care and eventually day centers and paid caregivers. Each stage of dementia requires new knowledge and help, so even if you start alone, build your team around you. That’s how you survive well. You can’t do this alone.